Wings: A Short Story

I rarely write fiction, not anymore, at least.  When I was younger I would fill up page after page with original fiction and fanfiction, but perhaps because I have so few life experiences compared to many people, it always falls short.  This is a short story that percolated in my head for years before I wrote it, sometime in 2015.  I’m posting it now because I needed something to update the blog with and I needed something cheerful.  I don’t know if this exactly counts as cheerful, but it’s not as sad or depressing as the things I usually write are.  I also happen to think that it is a decent model of disability as a social construct.

Anyway.  I like it.  I hope you do, too.

WINGS

 

When people hear what I do for a living, they generally blanch.  They don’t know what to say, so they stammer out something about how noble I am, how hard it must be.  They can’t crack a joke to break the tension because my profession isn’t something that gets joked about – it’s something that gets pity, yes, and admiration, yes, but jokes?  No.

Yet it never ceases to strike me as funny that people feel sorry for me – me, when I only work with them, when I am as normal as normal could be.  The truth is that the children in my care are just that, children, and the fact that they have such a devastating, disfiguring disability is hard for them and them alone.  Not me.

“But isn’t it sad?”  people ask, “being around, you know, the wingless all day?”

And they always seem surprised when I answer that no, it’s not sad.  They are children – they laugh and they play and they learn much as other children do.  And when they fly (and yes, it’s perfectly okay to say ‘fly’ around people who don’t, I mean, whoever went for a ‘walk’, anyway?) up the stairs into our modified building,  they are there not to be cured but to be accepted, loved and taught.

Inside our building – The Icarus Community Home and School, so much better than what it used to be known as, the School for Crippled Wingless – things are, by necessity, low to the ground.  Light switches, for instance, are about four or five feet off the floor.  Instead of the usual stools, these children sit in medical devices known as chairs, which have a back to them like a shelf might to help hold up their weakened bodies.  Broad flights of stairs connect the levels to one another, and every single room is accessible by hallway.

It’s actually a misnomer, by the way, to call all the children wingless.  Some do have stumps or sharply jutted bones where their wings should be.  Some have a few feathers on their backs.  Some were born with twisted wings which had to be removed lest they grow into the spine or something.  When it comes down to it, these children are flightless, not wingless – although that doesn’t stop them, of course, from trying to fly.  It usually takes three broken bones before your average six year old stops trying to make her flimsy, non-functional fifth and sixth limbs work and gives up.

At some point, though, they do give up on flying, and they learn to walk, and they learn that, in our world, at least, walking isn’t so bad.  It’s really only an annoyance on really rainy days, or when you have to cross a body of water.  And of course, most cities don’t have people roads on them yet or, as they say in the disability community, sidewalks.  Sidewalks are these strips of tarmac made for people to walk on, next to the traffic, instead of above it with regular people.

Actually, one of the problems with our wonderful school is that when the kids leave it, they aren’t expecting the teasing, the stares or the general inaccessibility of the world.  We tell them that they can do anything, but they quickly find out that they can’t.  They can’t reach the second, third or fourth stories of almost anything, because despite the Americans with Disabilities Act being twenty-five years old, most places still lack stairs.  They can’t play with other kids on playairs because they can’t get into the structures.  (At our school we have built our own playair, which we call a playground, where they can reach everything.)

The stories that these kids tell me sometimes break my heart – about other children being warned away from them, like being wingless was something catching, about the subtle and not-so-subtle stares and looks of outright disgust.  No matter how many times the staff at Icarus repeats that disability is natural, the majority of the world is quite firmly on the side that being wingless is unnatural.

This is why I’m so glad that we’ve got a half-dozen staff members who are wingless themselves, and who teach our students how to live their lives on the ground.  The input of these people is priceless, and to think that just a generation or two ago, the wingless were locked up in their homes, kept away like a dirty secret.  The progress that we have made convinces me that we can make still more.  The wingless will demand their rights, and America needs to be ready to give them.

So no, I don’t see my job as sad.  I see it as amazing – getting to know these kids who I know will change the world.  They don’t need to fly, after all, to be able to go places.

 

 

Author’s Note:

If you didn’t figure it out, this is the perspective of a special-needs teacher in a world where all humans have wings and fly easily, everywhere.

An Alternate Universe Where Disabled People Aren’t Murdered

Although I’m the first to admit that the very idea is fantastical and very much improbable, I like the idea of alternate universes.

Alternate universes are worlds like ours, but different.  They are every fiction story ever written.  They are fanfic.  They are what would happen if this battle was lost or this person lived or that person took the left road and not the right one on a summer evening.  They are constantly created, constantly evolving, just as we do.  Alternate universes are the home of fantasy, magic, play, hope and joy.  They are also where evil lurks, the Nazis won, vampires and werewolves rule, and the feudal system is spread over all the different continents on different planets in different spaces than ours.

There is an alternate universe where Harry Potter and Sherlock Holmes both exist, and where Mycroft Holmes absolutely hates dealing with the wizarding world and they feel much the same about him.

There is an alternate universe where the American Indians conquered Europe instead of the other way around.

There is an alternate universe where people have wings.

There is an alternate universe where I have a real job.

There is an alternate universe where everyone agrees that Black Lives Matter.

There is an alternate universe where people stop killing disabled people.

All of these are, unfortunately, equally improbable scenarios.

Something really horrible happened in Orlando, and my Facebook lit up like a Christmas tree.  Something really horrible happened in France, and people posted stuff in French that I don’t know what it meant because I don’t speak French but I assume had something to do with solidarity or something.  Something really horrible happened in Iraq, and my friends ask why the news media doesn’t cover it.

Something really horrible happened in Japan.  Really, really horrible.  Someone targeted people, and not just any people, but my people.  This person declared (last winter!) that disabled people deserved to die and he would kill them, and he did.

He murdered nineteen people and injured forty nine.  

Once again my Facebook lights up, but there’s a crucial difference.  Now, only my friends in the disability community are talking about it.

Only we are weeping.

Only we seem to care.

People say that people were murdered ‘in cold blood’.  I don’t know what that means.  Blood is warm.  I gave blood a few weeks ago and they lay the bags against my legs for a moment and I was genuinely surprised at how warm it was.

Blood is, give or take, 98.6 degrees F.  You cannot murder someone in cold blood because if their blood was cold they would be dead already.  You can only murder them in warm blood, in hot blood that spurts out and drains away from the body, leaving people conscious for agonizing minutes as their life force attempts to rush to their heart and brain.  Thanks to my own morbid fascinations I know about death.  I know how it works, how the body resists dying.  How it dies anyway.

At some point in high school English most everyone studies the Dylan Thomas poem, ‘Do not go gentle into that good night,’ and although I hated English overall, that poem is famous for a reason.  It’s a good one.  It’s about how we all – it only refers to men, but I do think it means all of humanity – fight to live, no matter what our circumstances.  We waste time, we do not realize how valuable it is, until the end, when we ‘rage, rage against the dying of the light.’

The media hasn’t even released the names of those murdered (on Tuesday, July 26, 2016) yet.  We know precious little about the precious lives that were lost.  Only that they were disabled, and were shut away, out of sight, out of mind.  And I will not begin to attempt to unravel the cultural or societal factors which we must consider here, except to say that I acknowledge that this tragedy is harder to bear for disabled people of color.

And anyway, I don’t think it was Japanese society or culture that led that man (whom I refuse to name, he gets so much press time anyway, he doesn’t deserve it, they do and I don’t know their names) I don’t think it was Japanese society or culture that led that man to murder.  I think it was worldwide society and culture, and the fact that, worldwide, non-disabled people simply do not see the value in disabled lives.

And that scares me.  Terrifies me.  In the deep, cold, bottom of my soul there is a fear that I cannot get rid of.

And that was just this week.  Last week, the very worst of American society came together when an autistic mans’ therapist was shot by police as he attempted to help his client in a public space.

The last I heard, the officer who shot the therapist (and was aiming for the autistic, Arnaldo Soto) had not been charged with any crimes.  The therapist, Charles Kinsey, survived, but both he and Soto are beyond traumatized by the event.  Two laws were broken: being black in public, and being disabled in public.  Not allowed.  Both men were POC.  Not safe.

I cannot help but feel that my thankfulness over this is somehow misplaced.  Shouldn’t I be outraged instead of thankful?  Shouldn’t I be angry?

Only I don’t do anger so well.  My body doesn’t know how to deal with it.  My brain cannot process these incidents as they continue to happen, over and over, again and again, and nothing is done, and nobody cares except the people who have been caring all along.

My body is sadness and pain and heat and headache and heartache.  It is batshit terrified that my friends of color will be the next headlines.  It is exhausted and battered.  Can your soul ache as well as your head?  My soul aches.  My soul aches for these beautiful people, and for this world which says that these beautiful people have no right to live in it.

I cannot read anymore, I cannot watch anymore, I cannot listen anymore.  Too many murders, too many bits of metal whizzing through warm bodies, too much blood soaking the streets and the floors.  I turn to my fiction, to my Harry Potter and Sherlock and BBC fantasies.  I turn to my alternate universes where none of this exists and it is just me, and a book, and my ipad, and the peaceful English villages filled with happy people in old fashioned clothes who never existed except on the screen and in my mind.

I cannot hold anymore.

I cannot do anymore.

Here is a song.

It’s by Tim Minchin.  It’s called ‘Quiet’ and is from Matilda, the musical.*

Have you ever wondered, well I have.
About how when I say, say red, for example.
There’s no way of knowing if red
Means the same thing in your head
As red means in my head. When someone says red

It’s as if we are traveling at, almost the speed of light
And we’re holding a light
That light will still travel away from us
At the full speed of light, which seems right in a way

What I’m trying to say, I’m not sure
But I wonder if inside my head
I’m not just a bit different from some of my friends
These answers that come into my mind unbidden
These stories delivered to me fully written!

And when everyone shouts like they seem to like shouting
The noise in my head is incredibly loud!
And I just wish they’d stop, my Dad and my Mum.
And the telly and stories would stop just for once!

And I’m sorry, I’m not quite explaining it right.
But this noise becomes anger and the anger is light
And its burning inside me would usually fade.
But it isn’t today!
And the heat and the shouting.
And my heart is pounding.
And my eyes are burning
And suddenly everything, everything is…

Quiet
Like silence, but not really silent.
Just that still sort of quiet.
Like the sound of a page being turned in a book.
Or a pause in a walk in the woods.

Quiet
Like silence, but not really silent.
Just that nice kind of quiet.
Like the sound when you lie upside down in your bed.
Just the sound of your heart in your head.

And though the people around me.
Their mouths are still moving.
The words they are forming,
Cannot reach me anymore!

And it is quiet.
And I am warm.
Like I’ve sailed.
Into the eye of the storm.

*overall, I dislike this musical as the parents and Trunchbull characters are awful and overblown and overbearing, but the character of Matilda is fantastic in it and I highly recommend googling and listening to this song, there are several good versions on youtube.

 

best place to learn about Japan tragedy is here: http://carlyfindlay.blogspot.com.au/2016/07/the-silence-around-sagamihara.html

 

What Autistic People Can Learn From Little People

 

As the holiday weekend approached, I found myself with no plans and, rather than spend it alone, I recalled that last winter, a friend that I knew from disability circles had been looking for some volunteers for a convention she was helping to organize.  So I texted her, showed up, and spent three wonderful days volunteering at the world’s largest convention for people with dwarfism.

Little People of America is a huge organization that was founded in 1957 and, unlike many disability organizations, is run almost entirely by and for the population that it serves, in this case, little people – also known as dwarves.  (Dwarf is the medical term for people of short stature, but their community is called Little People, or LP’s.)  As dwarfism is not the most common of disabilities, I have not had that much opportunity to interact with LP’s before, with the exception of my friend whom I already knew.  However, I always, if you will excuse the pun, looked up to the LPA as a model for what the autistic community could someday become, and after my experiences at the convention, I am more sure than ever that little people are people whom autistic people should emulate.

The LP community has many things in common with the autistic community, as well as many differences.  One major similarity is that just as autism presents itself very differently from person to person, so does dwarfism.  Many little people have secondary disabilities, but these mostly relate to their particular type of dwarfism.  For example, skeletal problems, breathing difficulties and hearing loss.  One interesting thing I noted was that many LP can walk short distances but use scooters or wheelchairs for longer distances and to fully participate in activities.  This to me is similar to how many autistic people can use verbal speech, but prefer to type or use electronic communication systems when they want to fully express themselves.

Another similarity is that LPs are of all races, classes and cultures.  I met LP’s from all over the country and the world.  Dwarfism, like autism, also tends to be genetic, but not always.  As a result, families there could be made up of all LPs, just kid LPs, adult LPs with some kid LPs and some not, just about every configuration you could think of.  Sometimes parents and kids would also have different levels of physical functioning. This is very similar to how in autism families some people have it, some don’t, and some people need more or less support within the same family.

Autistic culture and LP culture also appeared to be similar in that people genuinely cared about each other, and were happy to see one another.  The kids were seen as a vital part of the community, newcomers were welcome, and the atmosphere was very jovial and friendly.  It was clear that the people there delighted in being with others like themselves, and I have seen this same dynamic at work in autistic circles.  There is truly nothing better than being able to say ‘oh, you too? I thought I was the only one!’

However, there were and are also some major differences between autistic and LP culture, the chief one among them being that LP’s, overall, do not have the communication or executive functioning problems that autistic people face.  As my friend said, many LP’s do not consider themselves disabled at all.  They are disabled enough to get a parking placard, or help with employment, maybe, but that is it.  While LPA as an organization has become involved in some disability coalitioning, some LP’s do not see themselves as part of the disability community, and maybe in part that is because they do not have to.  Autistics often do not have this choice.  We have needs that we cannot deal with alone, and so we need the disability label to get help and support on an everyday basis.

I do not mean to dismiss the challenges that LPs face, but autism is hard, in a way that many types of dwarfism are not.  Dwarfism primarily affects the body, but autism affects not just the body but the mind, every part of the body and brain. Autism is joyous, wonderful, delightful – but it is also hard.  Autism disables you in every single aspect of daily living. From what I observed in the LP community, many people there only deal with physical disabilities.  They communicate easily.  They socialize easily.  They navigated a new city easily.  I saw few kids having meltdowns.  I saw nobody in corners crying, no shouting, no fights.  (This is not to say that these things didn’t happen, only that I didn’t observe them.)

For this reason, I think, LP culture is much more laid back.  They do not start things and end things precisely on time.  They are more disorganized and they are okay with that.  Their leaders do not need to know every single answer to every single question, because people overall are not so anxious to know everything.  They can let things flow more.  The conference was louder than other disability conferences I’ve attended.  It was assumed that the adults there could advocate for their needs and accommodations themselves. Transactions are simpler, quicker, because people do not need so much time to answer questions.  As an autistic adult, it was quite unsettling for me how casual they were about time, but I must remember that different cultures treat time differently.

I helped out a lot in the childcare room, and the differences that I saw there were astonishing.  No kids were off by themselves, stimming or playing quietly with electronics.  They were all interacting with each other, forming groups, alliances, friendships, naturally and easily.  They didn’t gravitate towards the adults, they gravitated towards the other kids.  Autistic kids often do gravitate towards adults because adults are safer than other kids, who are so often mean and hard to understand.  These kids also tended to be very articulate and speak really well, perhaps because they understand that as LP, people will treat them as younger than they are and so they need to compensate with verbal ability.  Autistic kids may speak really well in their minds, but our verbal abilities seldom reflect our intelligence.   (Oh, another similarity between autistics and LPs?  The children were all astonishingly beautiful.  I’m not kidding.  Autistic kids are gorgeous and so are dwarf kids.)

There were several instances at the conference where my autism caused communication difficulties.  For example, I asked one woman how old her children were.  Six and six, she said.  I asked if they were twins.  No, she said, confused, her daughter was Asian, and they were white.  Due to my faceblindness, I hadn’t noticed.  I also couldn’t always tell if a person was a LP or not, again, because I do not take in visual details very well.  The chaotic environment of the conference was stressful.  I could never have dealt with the uncertainty and general relaxed attitude of the participants if I were attending instead of volunteering.  But this wasn’t my culture; I was only visiting, so I tolerated it for the few hours I was there each day, then went home to relax.

Still, I do see the LPA as a model for some future autism conferences, and I do think we autistics can learn a lot from the LPA.  The primary thing is that the convention was, above all, a celebration of community.  It was not a place to get laws passed or advocacy work done; it was about socializing, about meeting friends old and new.  There were some business meetings but the general membership meeting only took up one morning, and the board of directors met the first weekend.  There were workshops, but they weren’t extensive. People were there to have fun, and it showed, with dance parties and pool parties and all kinds of fun events.  (Fun for their community, I mean.  I would have had a meltdown before I even approached a dance, which were, I am told, very loud and crowded and went on each night until the next morning.)

Another great thing that the LPA does is that they partner with doctors who are experts in dwarfism and dwarfism-related medical conditions.  These doctors fly in at their own expense and give lectures and see people for consultations.  People can’t get treatment, but they can get recommendations to bring back to their own doctors.  I think it would be awesome if we had top neurologists or speech therapists or communication specialists who did this at autism conferences.  There are some really, really great professionals out there but they are few and far between.  What if we could somehow gather them all in one place?  Wouldn’t that be something?

The LPA also promotes the formation of affinity groups, for example, groups for people with one type of dwarfism, groups for GLBT LP, groups for parents who adopted, regional groups, and so on.  They also had several workshops/sessions that were for LP’s only.  I’m not sure if the autistic community is quite ready for affinity groups at gatherings when we are still trying to come together as a community, but I love the idea of autistic-only spaces at conferences, and I would love to make them more of a reality.

The thing that I like best about the LPA is that there is never any question that LP’s are the experts on dwarfism.  Unfortunately, that attitude is just not that prevalent in the autism world just yet.  Whenever there was a gathering for parents, for example, there would be adult LP’s on hand to answer questions and guide parents through what it was like to live with dwarfism.  Non-LP parents certainly enjoyed meeting each other, but never did they raise their voices higher than those of LP’s.  Never did they disdain that someone with X type of dwarfism had nothing to teach them about their child with Y type.  Older LP’s were respected for what they had gone through and the things they had endured, in order to make things easier for the younger generation.  You rarely see this attitude in parents of autistic kids.

Interestingly enough, I met one LP who was also autistic, but ze was not interested in talking to me about advocacy or intersecting identities.  I know that there must be more.  I hope that in the future, little people and autistic people can come together more to learn from each other and build community.  From my brief sojourn there, the LPA have a lot more to teach us, and I, for one, am eager to learn.

Not There

(This was written during a period of depression and does not necessarily indicate my views at the present time. It is not directed at any one person in particular.)

 

None of my friends will ever admit this, but I have come to believe of late that more often than not, they are glad that I’m not there.

I see the pictures.  I see the smiling faces on social media, drinks in hand, bright faces turned towards the sun.  I see the invitation sitting in my email box.  I see myself clicking ‘no’.

No, I won’t go.  No, I won’t bother you.  No, I won’t demand anything special.

Yes, it will be easier.  Yes, you’ll have a better time.  Yes, you can admit it – you are glad that I’m not there.

I just wish that I could be, too.

 

Thea-the-therapist swears that I am not an evil person, and that the evidence of my empathy lies in my feeling so terrible.  She says that not everything is 100% my fault.  50%, maybe. 25%.

I don’t know how to explain that yes, everything is my fault, but wait, isn’t that awful egocentric and selfish of me to say?

I’m so confused.

I’m so utterly puzzled and stymied and dismayed by my own and other people’s behaviors.  I don’t understand humans.  I simply don’t.  Maybe I’m not human at all.

I understand autistic behavior.  I understand autistics.  I will crawl under this rock here and only communicate with my disabled friends.  I am not terrified of them.

But I am terrified of you.

I hurt someone.  I hurt someone I love.  I did something – many things – wrong, and I had no idea I was doing it.  I hurt someone I trusted, but nobody told me, not for weeks, months, until somebody did.  And now it is days, weeks later and I am still crying, I am still in pain because I hurt someone I love and I am fairly certain that there is no other worse feeling in the world.

And if talking about my pain now isn’t selfish, when I did the hurting in the first place, then I don’t know what is.

I cannot figure it out.  Human behavior continues to stymie me.  Rules and laws and social mores, I try to obey them but they are so very confusing.  I want to do as X asks of me, and as Y, but Z says that their behavior is unreasonable and Q says to not listen to them.  Gossip is wrong, but my brain craves information.  It wants to know why and how come.  I try to gain insights into other’s behavior by expressing my confusion to third parties, but oh, wait, gossip is wrong.  And Thea is a lifesaver but ze doesn’t know these people and I don’t know what to do.

So I do the safest thing.

I stay home.

I stay home so that people will not have to bear the burden of being around me.  I stay home because I’m scared that, if I am comfortable around you, I will slip up and slide a knife into your throat.  My words are like tiny daggers that my mouth throws around at will.  My actions are matches that light fires that burn, burn, burn, burn our friendship to the ground, burn our community, leave charred bits of ash, bitter tastes in my mouth and yours.

I’m not doing it right.  I’m not doing it right.  I know this, but I don’t know how to do it right, and so I continue to fumble along, wrongly.  You say, but how can it be so hard?  I told you what to do.  But just because you were talking about apples and oranges doesn’t mean that my brain doesn’t get stuck on notebooks and ceramic bowls.  How is it that my memory is so good for facts and figures but so terrible when it comes to remembering how to behave?  How is it that all my friends ask, all that they ask is that I just do this one thing, and I can’t?

All I understand is that I hurt people.  I hurt people that I love.  And so you don’t want me to be around you anymore, and I respect that.

Lessons learned:

You are better off without me, for I am the one who hurts people.

If I hurt people, they may not tell me the truth.  Therefore, I can trust no one.

And – in case this isn’t clear enough above – I am sorry.

I am so, so, so very sorry.

I am sorry that I hurt you.  I am sorry that I burdened you.  I am sorry for flippant remarks and my runaway mouth and my very existence.

I am sorry that we cannot communicate better.  I am sorry that we cannot trust.  I am sorry that you are hurting, and that you have your own issues that I can do nothing about. I am sorry for the sun, and the moon, and the stars, and if I could apologize for breathing I would probably do that, too.

I am sorry that you are annoyed by all my apologies.

But I still don’t know what to do.

Except stay home.

And hope

That you will have

A better time without me.

Pain

Pain.

It radiates from the center of my back, down my right leg, waves of agony, like someone is taking a claw hammer to the back of my calf and thigh.

Pain.

It circles my neck, my head, growing tighter and tighter until I think my eye might pop out of my head.

Pain.

It leaves my body exhausted and wobbly.  The drugs I use to counteract the pain leave me woozy, dizzy, like I am floating in a bowl of jelly.  I care about nothing, and nothing cares about me.  I get up, eat breakfast, take my pills, then fall back into bed like I haven’t just slept eight hours.

I am so utterly exhausted, but more than that, I am tired.  Tired of being in pain.

I am lucky, I know, that on a day to day basis, my disability does not cause any actual physical pain.  About a month and a half ago, however, I was moving some furniture to clean behind it to show that I am a Real Adult who Spring Cleans Like a Grown Up Person, and I did Something.  Something, I’m not sure what, all I know is that since then, there has never been a single day when I am not in pain.

I’ve been to the doctor, and the ER.  A massage therapist really helped, but I could only afford two sessions, (and I’m grateful for affording that.)  A chiropractor, who did fifteen minutes of manipulation that left me almost vomiting in pain and resulted in another ER visit.  (Chiropractors are quacks, by the way.  All of them.  They are not even medical doctors.)

They say I have something called sciatica, which is a bit like calling a stuffy nose a cold; they really have no idea what exactly is wrong, but that constellation of symptoms means that diagnosis.  So when I am standing in line at the grocery and almost crying, I tell people, ‘oh, it’s just my sciatica acting up.’  When I am forced to sit down in the aisle of a big-box store because my leg is spasming so badly, I say, sciatica.  Only it’s not just acting up, it is throwing a gosh-darn tantrum, the kicking-screaming-spluttering-crying kind, a performance worthy of any tow year old.

I go to physical therapy.  I dutifully do the exercises.  I don’t see any difference, not yet, anyway.  Next week I am seeing a Fancy Back Doctor, a physiatrist.  I cannot wait.

Until then, I have this thing called a life I am attempting to live and the constant pain makes it rather difficult.

Pain is now the center of my world, and like any center, it affects everything around it.

I walk and hike for exercise and mental health benefits.  I literally cannot walk across a room without pain now, and so I feel sluggish both physically and mentally.  My brain is in overdrive with regards to anxiety.  I am exhausted all day long yet lie wide awake at eleven, deep fear and panic filling my soul.  My social life is curtailed.  I cannot help out friends who are moving, cannot attend events that require any amount of walking or moving.

My energy is all taken by dealing with the pain, and so I have less energy, less patience, less willpower, less determination.  I should be doing this.  I should be doing that.  I should be doing something, anything, but I am not.  I am only lying, flat on my back in my bed, dealing with pain.

Pain makes you cynical.  It makes you vulnerable.  It takes who you are and remakes you into a darker, more twisted version.  It is harder to bite back comments, it is harder to not snap.  The cashier at Trader Joes asks how you are and you cannot find any words to answer him.  Words are harder.  Writing is harder.  Everything is harder.  The sun is hotter, the humidity is worse, you live off of sugar and carbohydrates because cooking is just too much work.

Pain.

Somehow, I drag myself to my part-time job, with the aid of copious amounts of caffeine and painkillers. Somehow, I keep living, though that implies I am much worse than I am.  I’m not, I’m just, like millions of people all over the world, in pain.  I am acutely aware that many people live in much worse conditions than myself and with much worse conditions.  I acknowledge that I am the epitome of a spoiled American brat, but……….I am in pain.

And pain, of late, is my whole world.

 

Stuff I’ve Learned From This Injury/Sciatica/Clusterfeck of Pain

Or, Dealing with Doctors While Autistic

  1.  Never go to the ER alone.  Take a friend or family member.  Also, if you’re bad enough to go to the ER, you’re probably too bad off to drive.
  2. Take your laptop/ipad/phone.  You can often hook into the hospital wifi while you wait.
  3. Take all the bottles your meds are in.  Do not count on remembering your exact dosages and names of them if you’re bad enough to be in the ER.
  4. If a certain prestigious local university is graduating the night you are going to the ER, remember that they may have some really, really awful traditions of Jumping Off Bridges and Landing in the ER, and you will have to deal with a longer wait because of that.  (Seriously.)
  5. If you’re dealing with a problem and have to see multiple doctors/therapists/specialists, keep a log on your computer about the problem, who you’ve seen, what you’ve had done, what meds you are on, etc.  You can simply add a line or two every time you see someone new, then print it out to take to the latest doctor.
  6. I also wrote a paragraph about my autism and how I best communicate, behaviors they might notice, etc, for doctors and the physical therapist and they seemed to appreciate it a lot.  (see below)
  7. Wear loose, baggy clothing to the doctor, often, if they can access your chest/back, they will not make you change into one of those horrible gowns.
  8. If you can’t bear to wear one of those horrible plastic bracelets, tell them that you are autistic, you cannot wear it, but you will hold it.
  9. I am still learning this one, but don’t beat yourself up over your lost productivity.  You are doing all you can right here and right now.  Nobody can ask for you to do anything more than your best.
  10. You should not be in pain.  If you cannot get the answers you want from your first doctor, keep looking, keep searching, keep going until you do get an answer.

Here is the paragraph I included with my health history.  I have been told by doctors and therapists that it is very helpful.  Please do not steal it but I do encourage you to write your own.

Very Important Information: I am Autistic.  I have Aspergers syndrome/sensory processing disorder.  This means that I process and communicate information differently than many people, and that my sensory system is very different than most people’s, including the way I sense and process pain.

Communication: I find it very difficult to make eye contact with people when talking with them but I am still listening even though I do not make eye contact.

My facial expressions do not typically portray what I am feeling.

I need you to: continually let me know if what you are doing/I am doing should hurt, and how much it should hurt.  I am willing to endure pain to get better but I do not know how much pain is acceptable.  Talking while you are doing things helps me take my mind off the pain. I need you to tell me exactly where you are putting your hands on my body as well as how deep the pressure will be, and how long you will be doing it for. In general I prefer deep pressure to any light pressure.

I process explicit verbal information the best.  I may not understand gestures or inferences.  It may also take me a second longer than other people to answer you verbally, especially if you have any sort of accent that I need to decipher.

Over

It’s over.

{My fellowship} is over.

The class is making a piece of word art to give to the {institute}.  Everyone contributes words.  The words include compassion, inspiring, dedicated, empowering, diversity, thoughtful, ideas, hearts.

It is glaringly obvious to me that they are missing the words ‘disability’ and ‘advocacy’, but maybe that was my mistake to begin with.  Maybe it was my mistake to think that this year would be about disability advocacy at all, when in fact, it was not.

I do not contribute any words to the word art.  But if I did, they would not be happy words.  They would be words like sadness, despair, pain, isolation, tears, self-loathing, ignorance, naivete, fighting, adversity.

I could go on, but I am so very tired of crying.

I could go on, but I am so very tired of fighting.

At the beginning of the year, Inge announced that she was going to do her main project on the issue of Slurb, because nobody ever talked about Slurb and it was really important.  I said that’s great, but actually, the disabled community has been talking about Slurb for years.  In fact, disabled advocate X Y Doe wrote a bill about Slurb that we’ve been trying to get passed in the legislation for years.  Inge said, well, I’ve never heard of any of that.  None of my friends have ever heard of that.

I gave her X Y Doe’s number and email.  I told Inge how great X Y was, how much ze had contributed, how awesome an advocate ze was.

At the end of the year, Inge gave a presentation about how she had done work on the issue of Slurb.  And somewhere in there she said, ‘oh yeah, and X Y Doe had something to do with it, didn’t ze?’

“Um, no.”  I said.  “X Y Doe did not have something to do with it.  X Y Doe wrote the bill and has spearheaded the issue of Slurb for years.  X Y is the most awesome advocate on this issue, the expert, the person who knows everything.”

Then I had to leave the room, because I did not want them to see me cry over the fact that Inge never contacted X Y Doe.  Inge never listened to or consulted any actual disabled people about the issue of Slurb. Inge, despite the accolades that she received from faculty and staff, never thought for one second that disabled people were the real experts here.

And with few exceptions, nobody else did, either.

I shouldn’t be surprised by ignorance.  I really shouldn’t.  But things that my classmates did not know included: eugenics.  Pronouns.  How disabled people were the first victims of the Holocaust.  How ABA is abusive.  How person-first language is not preferred by disabled people.  What oppression means.  Why black lives matter.  Why Autism $peak$ is a hate group.

On and on and on the list goes.  I was often told that people were learning so much from me.  What I wanted to know was why I wasn’t learning from them.  Why I wasn’t being stretched intellectually, only emotionally.  Why the deeper discussions I longed for about history and politics and how they intertwine with oppression and race and economics never happened.  Why the mothers of autistic kids still saw me as nothing like their kids even when I exposed my painful past and difficult childhood.  Why people still judged what I understood based on my verbal fluency and ability to express myself in a classroom, when that really is not my best form of communication.  (Writing is.)

The learning goals and objectives of the various classes included things like understanding local and state governments, having a deeper understanding of disability issues, knowing the ins and outs of the US health system.  Honestly?  I do not mean to brag, but I understood an awful lot of that to begin with.  What I didn’t understand, what I still don’t understand, is how a group of such caring, seemingly-intelligent people can still, the majority of the time, still not get it.

What I learned this year included the fact that mothers of autistic kids often hate them and fantasize about killing them.  That autism destroys lives, ruins families, causes cars to crash.  I learned that my experiences are not valid because I am ‘nothing like their kid’.  I learned that everybody, but in particular white men, really, really, really do not like having their privilege pointed out to them.  I learned that nearly everybody would prefer it if you kept your comments to yourself.

This year, I learned that I know a lot, and that I am actually intelligent, but that intelligence means nothing when I lack the verbal abilities to get my point across.  I learned that people will laugh at your jokes, but not include you in the group.  I learned that the disability community is quite different from the disabled community, and that I infinitely prefer the latter.

This year, I learned that texting a friend under the table is a good way to give yourself the morale boost you need to sit through yet another soul-numbing discussion or lecture.  I learned that personality and type indicator tests most likely mean nothing because not a single test takes into account disability.  I learned that the world I live in, and the world I’m building, is a unique one, but not everyone will want to live there.  I learned that very often, I will be building it alone.

To be fair, there were good moments this year.  There was one lecture on diversity where I really, truly connected with the guest lecturer and I feel like our conversation was enlightening to both of us.  There was a trip to DC that was one of the highlights of my disability justice work so far.  There were projects I did and connections I made that will be invaluable to my further career development.  There was laughter.  There was friendship.  There was reaching out, there were people who did get it, if not completely, then definitely partially. Of the eleven other people in my cohort, I will be keeping in touch with two or three, and that’s not a bad percentage, I don’t think.

I just wish………I wish I felt that school had ended, not a battle.  I wish I could be enthusiastic in recommending the program to other self-advocates.  I wish that I didn’t have to explain to people that parents do not make good peer mentors for disabled people because of the definition of peer.  I wish that my thoughts towards the program were not so saturated with bitterness and sadness and anger.  I wish that the word {fellowship} tasted sweet in my mouth and not sour, unpleasantness coating my tongue like the blood from a thousand bitten-back words.

This is yet another of those times when I curse my wonderful autistic memory. Because the fact is that I cannot forget sitting in an office and being told that my facial expressions and tone of voice were offending other people.  I cannot forget being asked if I could, possibly, just count to three before I spoke.  I cannot forget the humiliation I felt when the accommodations I needed were pointed out as special, or the undercurrent of resentment that simmered just beneath the surface of the class.

I cannot forget, and I cannot help but worry, because, you see, these people that were my classmates are expected to go out there and be leaders.  They are going to lead non profits and be on boards and change the future, and they will do so, the majority of them, while having no real understanding of the importance of having disabled people lead the conversation on disability.

If anyone from the program ever reads this, I know exactly what response I will get.  It will, inevitably, be the same response I have gotten all year, mainly, that people tried.  That people tried and that they had good intentions, that nobody meant to hurt my feelings, that they liked me, really, that why don’t I think about it like this, why don’t I try to put it in a more positive light, why don’t I, why don’t I, why don’t I.

But just because someone likes you doesn’t meant that they respect you.  Just because someone is friendly doesn’t mean that they are kind.  I am tired of people telling me that I can change others by changing my own behavior.  I think it is high time that other people stepped up to the plate and took responsibility for changing their own.  And if I spend so much of my time and energy trying to interpret their behavior correctly, trying to give them the benefit of the doubt, then why cannot they ever do the same for me?

I am grateful.  I am absurdly paranoid about making sure that everyone involved in this situation understands that I am very, very grateful that I was given the chance to participate in this program.  And I feel on some level that, given I was paid to do this fellowship, that I shouldn’t complain at all.  But then I think: would I ever want someone I loved or even liked to go through what I went through?  And the answer is a resounding no.  And so I must speak up.  I must ensure that mine was a singular experience.  My words, sadness, pain, despair, must not become the experience of other autistics or people with developmental disabilities in this or any similar program.

My program is over.  But next fall, I will return to the same classroom where I spent so many long hours this year.  I will return for an afternoon to give a talk on autism, oppression, disability culture, and person-first language.

So maybe this year wasn’t filled with all the best words, but maybe next year, maybe next year I will help to define the program with the best new word of all: hope.

An Experience in White Privilege OR The Story of the Dog in My Car

DOGINCAR

(image is of the very backside of the very large dog sitting in my somewhat messy car.)

       It was an ordinary day, and I had ordinary plans.

                Work.  Check.  Grocery store.  Check.  Driving home, I went over my next plans, of laundry to do, an essay to write, fanfic to read.

                I pulled into my driveway and noticed a large white dog sitting there.  I had no idea, of course, that this dog was out to completely derail my nice, ordinary plans.

                “Do you know this dog?”  I asked my landlord as I opened my door.  He was standing in the garden next to the driveway – he lives in one of the other units in our building.

                “No, he just appeared,” he answered. 

I turned back to the passenger seat to get my things, and the dog decided to be friendly.

“Hello.  Who do you belong to?”  I asked him.

He didn’t answer, but apparently my friendliness was an invitation, because he promptly climbed into my lap and over me, into the passenger seat of my car, where he sat, expectantly, as if I was Cinderella’s coach and he was a princess off to a ball.  He had a collar but no tags.  He was an ordinary, if rather large, dog.

My car is not exactly clean, but it isn’t downright dirty, either, and I did not like a strange dog getting his muddy paws all over my upholstery.  I told him so.

He did not appear to care.

My landlord came over.  We attempted to coax the dog out.  He sat.

I began to panic.  I pulled out my phone and tried calling animal control.  They had closed forty-five minutes earlier.  There was no emergency number.

I had a large, unknown dog in my car, groceries to unpack, a life to live, and no idea whatsoever of what to do next, so I did what an ordinary white citizen does in such a situation. I called the police.

“What kind of dog is it?”  asked the police.

“A dog dog,”  I said, all my knowledge of breeds thrown out the window by stress.  “He’s white…..ish…..he kind of looks like a bulldog…..or a pitbull……he’s very…..large.”

The police promised to send someone right over.

I continued to panic.  A neighbor attempted to get the dog out.  The dog stayed.  The neighbor told me that the dog lived three houses down and pointed out the open gate.  I ran there, knocked on the door, hollered for help.  No answer.

I called some friends.  All thought that the situation was ridiculous, but I was in no real danger.  It was, after all, just a dog.  I called my mother.  She was visiting with my aunt and I was in no real danger.  It was, after all, just a dog.

Twenty-five very long minutes later, a cruiser pulled up and an officer got out.  He was soon joined by two more colleagues.  They were all white men, and although I was hit by a sudden wave of humiliation, I was in no way afraid.

“He won’t leave!”  I may have been in tears by this point.  “He is in my car!  And he won’t leave!”

The police officers soon determined that the dog would not, in fact, leave.  Even with bribes of food from me and the police.

It was now almost an hour into this ordeal and I was getting a little hysterical. The officers kept calling me ‘ma’am’ and this unnerved me because it wasn’t my name.  Involuntarily my hands were going haywire.  It occurred to me at this point to mention to the officers that I had high-functioning autism* and that was why I was so upset, not because of the dog, exactly, but because what if the dog never left and he was interrupting my routine.  I did notice that after I made that confession – and a confession it was – the police officer’s body language changed a bit.  Was it just my imagination, or were they calmer, more deliberate in their movements and voices?  They saw I was uncomfortable with the ‘ma’am’ and asked my name and introduced themselves, using mnemonics so I’d remember them.  (I didn’t have time to explain face blindness, and so today, I have really no idea who they were.)

I was embarrassed.  Cops were expensive.  What if a robbery or a murder was happening elsewhere while three cops helped me deal with a wayward dog?  I tried to explain this to the officers.  They said that they didn’t care.  One officer in particular explained that this situation was exactly what cops were there for.  When people couldn’t deal with a situation, when we didn’t know what to do, I was supposed to call the police.  Always.  They never minded, he said.  They always cared.

This was supposed to make me feel better.  It actually did.

Finally, the cops located the dog’s owner.  Said owner came, unceremoniously grabbed the dog out of my car, and left without a single apology or glance my way.  The cops reiterated that I should always call if I needed help of any kind, and departed, (no doubt to have a good laugh at the sheer ridiculousness of the situation as they wrote it up.)  I went inside, put away my groceries, mentally threw away my evening plans from sheer exhaustion.  I posted pictures of the ordeal on facebook, tried to remember that I will laugh about this some day, went to bed.

And it was not until the next morning that it occurred to me that not once during the ordeal was I the slightest bit afraid of the police officers.

I was afraid of the dog.  I was afraid, mainly, that he would stay in my car forever and never leave, because rational thought it not always my strong point in a crisis.  I was afraid that he would defecate and the smell would stay there forever.  I was afraid that he would bite or growl. I was afraid that people would think I was stupid for getting so upset over such a silly, random thing.

But I was not afraid of the police.  I did not hesitate to call the police.

I never have been.

This is a privilege.

In the light of a new day, I wonder if I would have called the police if my skin was not so pale, if I did not have the solid background of an upper-middle-class WASP.  If I were nonverbal.  If I didn’t speak English so well.  If……if…….if……..

I like to think that all of the police in my small city are fair.  I like to think that they treat all people equally.  I like to think that racism is something that happens a few neighborhoods over, that there would never be a shooting this side of the river, that my state is kinder, nicer, better.

But I know that is not true.  I know.  I see the statistics and know that my life is a lie, an apple-blossom-pink-and-white fantasy, a liberal enclave where all my friends agree as a matter of course that Black Lives Matter.

Looking back, I realize that the whole experience of the dog-in-car situation was more than just a ridiculous event I will tell stories about to make people laugh.  It was an exercise in luxury.  It was one privileged person employing her privilege, to call people who carry the means to kill me and be able to trust that they will not.  On an ordinary day, dealing with an unordinary event, I never feared being blamed.  I never feared being fined.  I never feared anything at all, except that big white dog.

I am thankful.

I am thankful that the dog is gone.  I am thankful that he did not destroy my car.  I am thankful that the cops were kind, and thoughtful, and genuinely caring. 

I am thankful that I never truly had to worry that they would be anything but…….even as I despair of a world where so many will never be able to see the police as I did.  Safe.

 

 

 

*I do not ordinarily use this term. However, I did use it here deliberately because I thought that police might be more familiar with autism than Asperger’s syndrome, but did not want to completely jar them with the disconnect between what they might expect an autistic person to look like.  I was in a situation where I needed people to be on my side, and the term ‘high-functioning’ ensured that they saw me as a full, capable citizen.